So I was just checking some of my messages this evening and one of them had a topic that another reader would like for me to start investigating / rating when I travel , which got me to thinking…. I know the things that matter to me , but I want to know what matters to you when you travel?
We all know that no two lupus or autoimmune patients are alike, so why would our travel needs be the same? And as I am half way through my summer travels I’m really gearing up to begin some serious blogging ( can you imagine my serious face as I type this? ) and I want to make sure that I touch on the important things to as many of you as I can.
Here is a short list of some things I look for because of how the disease affects me..
1. How long is the flight, and where can I sit on the plane ( bathroom access, walking access ect )
2. What kind of transportation is available at my destination for basic sight seeing ? Walking long distances can change my entire trip by wearing me out to the point I have to take a day off … Public transportation is a life saver
3. Hotel accommodations for anyone but especially for the ” invisible illness ”
Will I have a ground floor room? How many stairs do I have to climb just to reach an elevator? What kind of toiletries are provided and do they work for sensitive skin? Feather or foam pillows available? Is breakfast included and does that include room service ( morning meds )
4. How much shade is available on the beach or at the pool area where we will spend most of our time ?
5. What kind of adventures are there at my destination that I can do even if I need a cane that day?
So let me hear from you , what matters, what are some things that keep you from traveling that I might be able to help you with? Okay now get busy messaging me or commenting below !!!
Wishing you plenty of spoons ,
The traveling lupus warrior.
Let me take a few minutes to introduce myself to you. I am a 34 year old woman who was diagnosed with Systemic Lupus and Antiphospholipid syndrome after waking up one morning in September of 2014 with total numbness down my right side, extreme fatigue and confusion. Like most patients with invisible illness/autoimmune disease, my quest for a diagnosis was not quick or easy. I went through several different symptom stages, flares, doctors who couldn't figure it out, doctors who wrote me off as being stressed, and even family members who tried to chalk it up to stress. Frustrating is the word that comes to mind, or shall I say, frustrating is just the tip of the iceberg of emotions . I am a nurse, mother of three fabulous children, and the wife of an amazing man who is my rock, my sanity, my comedian, and my cheerleader. Every day is a struggle, a choice , and a gift. I will be completely honest with everyone and say that I have gone through various stages of emotions since that morning, often repeating stages, and I want my fellow lupus warriors to know that its okay to cycle through emotions. I decided to start a blog when I became vocal about my illness to friends, co-workers, and on social media...several people reached out to me and suggested a blog and told me how much it was helping them to hear from me. So the big question was..what on earth could I blog about concerning lupus that there wasn't already an article out there? The smaller question was , do I want to focus my energy on the negative mundane lupus topics such as flares, medications, pain, effects of chronic illness on your family? No, I don't want to focus on all of those things, I want to help, I want to get back in the swing of life enjoying everything and every second regardless of my disease, and I want to help you do the same.
My husband and I love to travel and we do it often. This past December we went to The Bahamas and stayed at The Ocean Club, I went on and on to him about how fabulous the hair dryer was because it was so light that I could actually tolerate holding my arms up long enough and yet it dried my hair quickly and without frizz ( ladies, don't we all agree that hotel toiletries and accommodations are a big deal?!) When we were getting ready on our last night there, my husband said you should keep up with all of the different hair dryers we have when we travel and write about it...hmmmm good idea! So how does my hair dryer finding lead me to lupus friendly travels you ask, because we all want to enjoy our travels and we all want good hair and good skin and the ability to do the activities planned for our trip...but it effects the lupus patient so differently than others. So join me in our travels and in all of the things and places that we find who make for Lupus Friendly Travels! Lets get packing...